Tag Archives: Advisory Council

Expecting cherry blossoms and spring in D.C., I was dismayed when Nor’easter Toby was predicted to dump 10 to 12 inches of snow on DC on Tuesday and Wednesday of Summit week. My alarm went off at 5:00 am Wednesday and I anxiously looked at my phone for flight updates – it was scheduled ON TIME! I can’t describe how excited I was that I was going to get to DC in time for the Advocacy Summit activities that afternoon.

While most participants worked for a Komen Affiliate or Komen HQ, my nametag read “Komen 3-Day Champion”. I was a bit startled, but decided I could live with being a champion for our 3-Day fight!

Watching others enter the registration area, there were lots of squeals and hugs. I felt a little like the in-law who hasn’t met the extended family yet. Thankfully the Komen family is an easy family to find your place. The meeting started promptly with a welcome and a launch into the current relevant political landscape on the Hill. Our task became clear – we were going to focus on three key issues and have a specific request for legislators on each issue:

For Fiscal Years 2018 and 2019 (FY18 and FY19), increase the appropriation for the National Breast and Cervical Early Detection Program to the authorized $275 million amount. This program is in place to assist low income, uninsured and underinsured women in accessing breast and cervical cancer screening. It is a state-federal partnership and was established in 1990. This program is a complement to Komen’s screening and diagnostic grants and is critical to make sure all women can receive the early detection they deserve.

For FY18 and FY19, increase NIH funding for biomedical research by $2 billion per year. The National Cancer Institute (NCI) is housed within the National Institutes of Health (NIH). While recent years have seen increased funding for NIH, it is still behind biomedical inflation and much more money is needed to continue to keep up with current domestic and international research for cancer.

For House Members, become a cosponsor of H.R.1409, the Cancer Drug Coverage Parity Act and for Senators, be aware of this House Bill and ready to vote yes when it hopefully makes it to the Senate. This bill would simply make insurers in every state and territory to treat oral medications for cancer covered under pharmacy benefits at the same benefit level as IV medications covered under medical benefits. This is already a state law in 43 states, including Texas, but is not a federal law.

The meeting then covered the importance of having our voices heard on the Hill! This was particularly helpful because they explained how little time we might have with a legislator and that we may just meet with their staff and it may be in an office, or a hallway, or the waiting room as space is limited. Knowing this made it clear that it was not a personal insult, but rather they wanted to hear from as many constituents as possible so they fit people where they could find space!

After dinner we were all excited to hear Paula Schneider, Komen’s new CEO, talk to us about her life, her cancer journey and why she is so passionate to take the lead with Komen. During her personal and moving talk, she had us all hold up a hand if we were survivors, co-survivors or knew someone with breast cancer. You can imagine the entire room had their hands in the air!

Paula also spoke of the hidden costs of breast cancer; she reiterated that women of color in the U.S. are 40% more likely to die of their breast cancer than white women, and that more research focus must go toward metastatic disease (both parts of Komen’s Bold Goal of reducing death from breast cancer 50% in the U.S. by 2026).

Next to the stage came the one and only, Nancy Brinker! As you can imagine, we all felt as if we were in the presence of a rock star! She was as passionate, beautiful, gracious and well-spoken as you would expect. She took us back to the beginning when the word “breast” could not be spoken in public to where we are today. She reviewed her promise to her sister Suzy and the growth of the Susan G. Komen organization and the new international focus she has taken. Nancy quoted Marie Curie, “I never see what has been done, I only see what needs to be done” as her inspiration for moving forward to focus on disparities in breast health and all the programs she is involved in around the world.

Thursday, March 22, 2018

Day 2 and Hill Day

I woke up early, excited and a bit nervous about the day and the task ahead. It was exciting to learn at breakfast that the House had passed their version of the FY18 budget late the night before! The good news was our first ask to increase funding for the NBCCEDP had received a $9 million increase for FY18, bringing it to $197 million. Now we had to adjust our ask to a thank you for the increase this year but please keep it going for FY19 and get to the $275 million goal. The BIG news was about the NIH funding! Rather than the $2 billion increase for NIH we had hoped for, the House had passed a $3 billion dollar increase for NIH! So, a HUGE thank you for FY18 was added to our ask, along with a request to keep the increase going for FY19. It is safe to say that as a group we were a big bunch of happy campers that morning!

Because the first visit of the day was to a Senator, the entire sharply dressed group from Texas was assigned this meeting. Ready for battle, we were greeted by Senator Cornyn’s staffer in charge of health issues and he ushered our large group into a side hallway as we were overflowing the Senator’s office. Knowing we would not be granted much time, we quickly introduced ourselves and launched into Komen’s Bold Goal and discussed the three issues and “asks.” The survivors of the group (including me) all contributed personal narratives to the legislative issues. We took a great Texan group photo with the staffer in front of Senator Cornyn’s office. This large meeting was a profound beginning to our time on the Hill.

After this meeting, we split up to start the small group meetings – we had a lot of House offices to cover that day! I was lucky to be partnered with Eliza May, the VP of Mission Services and Community Outreach from the Komen Austin Affiliate. This was her sixth time to advocate at the national level, and had previously worked in both state and federal government in several capacities prior to coming to Komen. I’d say I hit the jackpot! Eliza and I had four more scheduled meetings and another nine representatives who were not officially scheduled but we wanted to at least go by and drop off an information packet.

Eliza and I felt like we made the perfect team. It is unusual to meet someone and work seamlessly from the beginning, but we did! Not only did we do some serious discussing of the issues with our legislator’s staff, we even got an impromptu meeting with a staff member of Representative Henry Cuellar because Eliza grew up a block away from Representative Cuellar and asked his staff to leave him a note.

We walked over 14,000 steps (Fitbit certified) while on the Hill and made a total of 14 visits to legislators’ offices. Along the way we had some fun and cracked each other up; half from exhaustion and jubilation, and half simply because we had some funny adventures! To say we were proud would be an understatement, and to say we were exhausted would also be an understatement!

Despite our exhaustion, Eliza and I made use of the Senate Gallery passes we had been given by Senator Cornyn’s office. It was quite impressive, although there were many, many empty chairs given the impending government shut down. Somehow, they did still manage to get the $1.3 trillion budget in front of the President by Thursday where he signed it into law!

After a brief stop at the Komen reception we joined Ginny Kirklin, Houston Affiliate advocate, for some tapas. I hate to admit it, but we ate enough tapas for a family of 8! We concluded that it was also well earned and no guilt was allowed! A solid night’s sleep followed.

Friday March 23, 2018

Day Three and Final Day of the Summit

After sleeping the dreamless sleep of the righteous (ok, maybe the dreamless sleep of the overfull stomach), I woke up with an Advocacy Hangover (stole this term from someone else but it was very fitting). We began with a breakfast where we all compared notes and stories from the previous day. It seemed that everyone had a hugely successful day on the Hill.

Our final program was about the state of Medicaid in the states. A panel representing government, insurance and medical economic research discussed Medicaid and Medicaid expansion considering the ACA, and States’ right to waivers. Without going into details, it was a wonderful presentation that educated us all and confirmed that Medicaid and Medicaid waivers are a very complex issue between states and the federal government. Some interesting statistics about Medicaid that I didn’t realize:

1 in 5 Americans is covered by Medicaid

25% of the state budget in most states goes toward Medicaid

50% of all births in the U.S. are covered by Medicaid

Medicaid is the single largest provider of long-term care in the U.S.

The take-home message from this panel is this – states are trying to improve their health care system while being good stewards of taxpayer money in a crazy political system.

Our final speaker was Vicki Sumner *, a 44-year-old, 8-year Met thriver who spoke of her difficult journey with metastatic breast cancer. The median survival rate after a metastatic diagnosis is 24 to 36 months. She has far surpassed those months but she now faces her 12-year-old daughter who is asking the hard questions. She wants to be able to give her better answers. She made a strong appeal for new chemotherapies, targeted therapies and immunotherapies. Increased funding for metastatic disease is CRITICAL if we are to achieve the Bold Goal.

As she concluded, there was not a dry eye in the room. THIS is the reason we were in Washington D.C. and why we must all continue to walk, to bring new walkers to the 3-Day, to raise money and awareness and we must all be advocates with our legislators. They can make a substantial difference and we need their collaboration. We can be heard but only when we raise our voices as one.

*Our friend Vicki Sumner, who inspired us all last month in D.C. with her metastatic breast cancer journey and urgent call for more research funding, passed away this week. She was a devoted wife and mother, and a passionate advocate. Her passing is a tragic reminder of the importance of our work together.

Our thoughts and prayers are with her family. Vicki, along with all those we have lost to this terrible disease, remain the inspiration for our work.

This year, we don’t need to dive quite so deep, since most of what we shared last year still applies. But we definitely wanted to keep you looped-in with the updates and changes that have been made to the 3-Day routes for 2016. We’re also bringing in members of the 3-Day Advisory Council to share their thoughts about the 2016 changes. These participants stand as the “voice” of the 3-Day community and their input has been instrumental in strengthening the communication and camaraderie between Komen and the 3-Day family, so we’re thrilled to have their insight here on our route updates.

New for 2016 – Meredith, the Event Planning Manager for the Atlanta 3-Day told me that the 2016 event doesn’t have too many major differences from last year. Day 1 starts in Stone Mountain again, and should look pretty familiar except for a few changes on the last two miles before camp. On Saturday morning, the first half of Day 2’s route will be a reverse of Day 2 from last year; in other words, the morning route out of camp up to lunch will be the same route that brought walkers from lunch to camp on Day 2 last year (of course, there will be other pit stops in between). Meanwhile, the entire second half of Day 2’s route this year, from lunch back to camp, is brand new. With regard to Sunday’s course, Meredith shared, “You’ll also see some changes on Day 3: Atlanta Pride is happening the same weekend as the Atlanta 3-Day, so on Sunday, we’ll have to go around Piedmont Park, rather than through it as we have in the past. You’ll also see a few changes to middle miles of Day’s 3 route.” The Closing Ceremony will be at Turner Field again. Meredith pointed out a couple of highlights that walkers can look forward to in Atlanta this year: “Get your cameras ready for a photo op on the Jackson St. bridge, made famous by The Walking Dead. And Atlanta’s new Beltline Trail will play a starring role in our Day 2 and Day 3 routes this year.” She also added, “And yes, Atlanta never disappoints in the hills department and some of the city sidewalks are a little rough around the edges, but hopefully our Atlanta walkers have been preparing for that!”

In Their Words – Here’s what Charles, Beth and Sylvia, three of our 3-Day Advisory Council members, had to say about the 2016 Atlanta updates:

Charles (5-year Atlanta 3-Day crew member) – The Atlanta 3-Day will mark Charles’s sixth year as a crew member and his fifth year as the captain of the Traffic Control crew team. Since he hasn’t walked in the 3-Day before and spends most of his crew time in camp, Charles didn’t have much feedback about the changes to this year’s Atlanta route. But he did say, “I think the route is good! My wife (this is her 6th year as a walker) is disappointed about not going through Piedmont Park, but she is looking forward to the Belt Line trails.” Charles and his wife Renee participate in the 3-Day in honor of Renee’s mother, who is a breast cancer survivor.

Charlie, on right

Beth (2x Atlanta walker) – Beth, a breast cancer survivor herself, is excited to be returning to the Atlanta 3-Day after completing her first walk last year in Atlanta. Beth shared, “I am going to miss walking through Piedmont Park, but think the Beltline will be a great addition.” One other thing Beth enjoys about walking in Atlanta in October is the excitement of fall and the upcoming holidays. “I love walking through the areas that always have their homes decorated for Halloween.”

Sylvia (11-year 3-Day walker) – Sylvia, who lives in Florida, will be walking in Atlanta this year for the second time. “I love the parks, and the beautiful trees and old homes. I love Stone Mountain, and the wildness of it.” Asked what she thinks about the route updates, she said, “The changes are truly going to help. I can’t wait to see the new routes, as I went to college here and it is a trip back in time for me.” Having such a long history with the 3-Day, Sylvia had some other thoughts to share “It is truly the journey that brings you to the awareness of why each of us are here. We have our own personal reasons for wanting to travel this path…but each of us, in our hearts, shares a passion for doing something, somehow, to make a difference, to change a life…to find a cure. Each of us, as we walk these miles, travel not only the journey of the road, but also the journey of our hearts. Each of us become one of a family that is united across all boundaries, to do what we can to truly make a difference, and we know that each step does make a difference.” Beautifully said, Sylvia.

Keep an eye on the 3-Day blog in the coming weeks when we’ll continue sharing updates about the remaining 2016 3-Day routes.

This year, we continue to keep you looped-in with the updates and changes that have been made to the 3-Day routes for 2016.

We’re also bringing in members of the 3-Day Advisory Council to share their thoughts about the 2016 route changes. These participants stand as the “voice” of the 3-Day community and their input has been instrumental in strengthening the communication and camaraderie between Komen and the 3-Day family, so we’re thrilled to have their insight here on our route updates.

We have already shared the Michigan and Twin Cities route updates, and today, we bring you some exciting info about the SEATTLE 3-Day route.

The Seattle 3-Day is the event whose route has undergone the most significant changes in 2016. Because Seattle would be seeing such substantial updates to its route, earlier this year, Seattle Advisory Council members Dottie and Tina were invited to join the 3-Day event planners on a route drive in Seattle, where they got a sneak peek at the changes. Tina, who will be walking in her 15th and 16th 3-Day events this year (Seattle and San Diego), shared her thoughts on the updates.

“I know the route has been an ongoing concern over the last years for the Seattle 3-Day and my team. Spending the day driving the routes with 3-Day staff and discussing the reasoning and thought process was amazing. Every single concern was addressed and great changes are being made. I love that they are looking at it through the eyes and perspective of someone who is walking the 60 miles.

“On Day 1 I am so excited that we are developing plans to walk through the Microsoft campus. Many hills were eliminated and roads have been changed to give us a change of scenery.

“Day 2 is looking to incorporate so many fun changes! We are planning on reversing the route heading out of camp so we can walk into Redmond Town Center and avoid heading straight up the huge hill first thing in the morning. We’re planning on heading into Kirkland from the opposite direction which is great because it takes us down to the water for lunch. I love the route out of lunch because we will continue to walk along the waterfront through downtown. To make our way back to Redmond we are working on a gradual, progressive uphill that incorporates the Cross Kirkland trail and hopefully the Google Campus. This will help break up the hill as well as move us safely over the freeway while providing some new scenery as well.

“I am so pinking excited for the changes to Day 3. I love that we are planning on heading north to Ravenna so we can walk along the shores of Green Lake again. This route would allow us to come into the South Lake Union area from a different direction, while enjoying views of the lake and downtown. Although I will miss the Ballard Locks, I can’t wait to see what this new route provides for walker stalker opportunities. I love, love, love how we are planning to walk into Seattle with views galore of our amazing city and the water that surrounds it. I love that we are planning to approach the city from a different way—walking along the waterfront with the possibility of having our last pit stop/grab & go at Centennial Park, which is clean, beautiful and amazing!

“All three days will provide new scenery, roads, photo opportunities, large areas for cheering stations, and something new for the veteran walkers, as well an amazing experience for our new walkers! I am beyond thrilled that the walkers’ voices have been heard and that we are making changes. I couldn’t be happier to be a part of this great experience and amazing organization.”

Another Advisory Council member taking part in the Seattle 3-Day is Anthony, a long-time Route Safety crew member from Arizona. “This will be my 8th event. All of them have been on Route Safety. This will be my FIRST time crewing Seattle. It will be lots of fun, especially since I lived there a long time ago.”

Can’t wait to see all you Seattle 3-Dayers out there in a couple of weeks!

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Welcome to the 3-Day Blog!

This is a place to share the inspiring and extraordinary stories of the 3-Day community. It’s a place to highlight the exceptional people who claim the title 3-Day walker or crew. It’s a place to call out some of the best wisdom, tips, and just-plain-great messages that we hear from you.

New to the 3-Day Blog? Our Insider's Guide to the 3-Day is a great place to start! This series of posts will fill you in on what to expect on the 3-Day - from the route, to camp, and everything in between!